what happens next?

karen_white

Registered User
Apr 21, 2004
72
0
Berkshire
My first time in the forum and have been upbuilt and also saddened by many of the notes that I've read.
My Dad has vascular dementia.
After seeing our Mum on the verge of a breakdown we had to take things out of her hands and the hospital were ready to give Mum a rest and Dad some respite care.
It all happened so quickly 18 months ago. Dad hasn't been home since.
We soon realised that he was not able to come home and needed specialist care. The hospital were wonderful, but Dad knew what was going on, even though he has dementia and I will never forget the night we took him in. We all feel so guilty as we had to lie to get him in the car.
He now lives in a EMI unit and the staff care for him wonderfully - although he's progressed further in the last few months.
He now doesn't speak - only yes/no and will not eat.
He used to love cups of tea and picking at sandwiches, but won't even touch them now. He won't even drink his Ensure and they are having to monitor not only his food intake, but what he's offered.
What happens now? The home just keep saying that we have to wait and see, but it's only down hill from here, so what will happen?
He's in his 70s. Will they just let nature takes it's course or will the feed him intrevenously? We don't want to see Dad suffer and prolonge the illness, but we don't want him to waste away and die from forgetting to eat.
Can anyone advise if they have been through this? Or what can be done for him now?
We love him and miss him so much - we just want the best treatment we can get for him.
thanks
 

Brucie

Registered User
Jan 31, 2004
12,413
0
near London
Hi Karen

your story is a sad one but it is also one that will be familiar to many of us.

In your situation I would try taking in little bits of different types of food each time you go, ask him if he would like to try a bit.

I found that my wife's tastes in food changed massively when she went into care - she will eat things now that she would never have touched previously. Other things that she liked, she won't eat. She has problems with food texture - she is very sensitive to anything that is hard in soft food for example.

Try some desserts. Try a few things. They may none of them work, but you will have explored the bounds of your Dad's current condition. There's nothing to lose.

In our situations, we can only try our best, for as long as we can.
 

susan

Registered User
Aug 18, 2003
125
0
east sussex
Dear Karen
My dad was taken into hospital very quickly 3 1/2 years ago and he went downhill very quickly after that and had several major strokes - unbelievably he pulled through them, although his intake of food and his weight fell drastically. A year later he was moved to a EMI nursing home, started eating, but his speech and ability to walk became very intermittent - in our case dad loved soft little toys - they became his friends - and they always got hidden in his own secret place - oh did we have fun finding them!!
He also loved and still enjoys soft creamy yoghurts - mum takes some in every time we visit - and if he is awake he is fed them.
You just have to keep trying your best, but accept that not everything he used to like will be the things he likes now.
Hopr this helps take care Susan
 

Nel

Registered User
Mar 24, 2004
20
0
warrington
What happens next

Hi Karen

My Dad is in an EMI unit as well, he eats like a horse but is consistently loosing weight. He is 82 now and loves Jaffa cakes and Maltesers, I take them in regularly and he munches away happily and still eats his meals. The look on his face when he has his first taste makes me smile for the rest of the day! He does still wander quite alot so his weight loss is put down to that by the powers that be.

Nel
 

karen_white

Registered User
Apr 21, 2004
72
0
Berkshire
Thanks for your reply Nel.
Dad is 78 this July as unfortunately cannot walk anywhere anymore and either in his wheelchair or in a comfortable chair.
I hadn't through about Jaffa cakes - will try that tonight!
I read you other post on to visit or not to visit. I do feel for you.
I think it is a man thing as my brother doesn't visit Dad much - he says he finds it too hard.
I feel like shaking him and saying "WE ALL FIND IT HARD"....but you just do it don't you.
I agree about spending time in the living years - no matter what communication you can have with your loved one.
Dad had me quite late in life (I'm 26) and I can't remember a lot of my dad, only this shell of a man who I visit. But we try to remember.
Take care Nel.
Karen.xx
 

Nel

Registered User
Mar 24, 2004
20
0
warrington
What Happens Next

Hi Karen

Hope the Jaffa cakes work, the mini ones are the easiest to try.
My brother is home on a visit from Spain, he will go see Dad every day whilst he is here, but he only comes home twice, sometimes 3 times a year so he can re-charge the emotional batteries. He does care, but at a distance!

I tried to re-live some memories for my Dad on Sunday in the hope that I might spark some reaction of some kind. Unfortunately all it did was make me cry because the memories were so special to us once. Still I will continue to look for other ways to try and get his interest and keep him with me for abit longer.

If the Jaffa cakes don't work try things that just melt in the mouth, I've tried Wotsits, maltesers, egg custards are a particular favourite.

Take care

Nel
 

karen_white

Registered User
Apr 21, 2004
72
0
Berkshire
Thanks Nel.
Dad loves egg custard tarts actually and he has them every other day - we try to be good, rather than feed him lots of sweets. Although it's so tempting most of the time as he loves them so much.
Had a lovely visit with Dad last night. With the lovely weather around us Dad has been in the garden this week.
It's done him the world of good for his depression and he's eating a bit more.
It's amazing the difference. And although he was violent yesterday morning and wouldn't have his false teeth in, it was lovely to see him happy.
He was even trying to make conversation and we were talking about how he managed to do his hair that morning and how good it looked - he hasn't been able to do his hair for years, but as long as he thought it was the truth, it was good enough for us :) .......

Also, what made it even more special was when we left. Dad gets very frustrated when we leave and he gets very down and sometimes tearful as he knows that he is in a place where he can't leave and 'go home'. I gave him a big cuddle and kiss and told him how much I loved him and missed him and that I would be in again soon to see him....and he thanked me. I can't remember the last time he did that and it brought me and my sister to tears. Was wonderful too see some reaction and found it so encourgaging.

We know Dad won't get any better than he is right now and will always deteriorate, but moments like that a priceless.

All the best.
Karen.x
 

Brucie

Registered User
Jan 31, 2004
12,413
0
near London
Hi Karen
you say "but moments like that a priceless" and that is so correct!

Isn't it funny how one's perspective on life changes when Alzheimer's hits your family? Suddenly things that were once so important are no longer so much an objective, but small signs of recognition, etc can lift the day.

It is so good to see a positive and happy message like yours. Thanks!

If your Dad isn't diabetic and he likes sweet things, then why not feed him custard tarts regularly? I do that for Jan with cakes and chocolates and she clearly gets a lot of pleasure from it.
 

karen_white

Registered User
Apr 21, 2004
72
0
Berkshire
Will do Brucie - thanks for the kind words. He does love them, so I guess, yeah, why not let him have them as much as he wants.

We continually ask the home what would be best for him. Even though they do care for him very well, they all have difficulty seeing them all as people still so that don't really care what we give him to eat.

We even had a lovely time with one of Dad 'friends' (as we like to call them). Les was sitting happily with Dad so we joined him in the conversation as well. It's the most he's spoken since we met him months ago. He was so polite and even offered me some of his sandwich, which I kindly said thanks, but no thanks to.
Looks like the weather is doing all of us some good as he managed a 'god bless' when he went inside.

Was a lovely afternoon and rather than a burden, I certainly feel like what I've seen you write before, in that I feel privledged that I have come to know many lovely people in Dad's care home and see them all as individuals rather than other patients with AD.

I hope you and Jan are able to enjoy the lovely weather too.

Karen.x
 

Nel

Registered User
Mar 24, 2004
20
0
warrington
Hi Guys

I agree, these moments are priceless and keep you going through the bad bits. I sometimes feel I give my Dad too many sweet things, but what the hell, he doesn't have many pleasures left in life so I give him whatever he enjoys.

Enjoys the special moments, keep them close to your heart for the memories will never leave you.

Love
Nel
-x-